MY FEEDING TUBE FORMULA JOURNEY!

[@jennifercastro6149]

My husband got me to do the indoor skydiving. It is great. You feel so free and your problems just fade away. I highly recommend it. I think you'll love it!

[@thefreylife]

Jennifer Castro that sounds so fun! Glad you got to go and felt free as a bird! :)

[@madison8568]

I am glad you are speaking out about feeding intolerance! Especially regarding Kate Farms, everyone makes Kate Farms seed like it is all rainbows and butterflies. The truth is for people who have motility and digestion issues and malabsorption it is a very poor choice of formula because compared to other formulas in the same category it is extremely high in fat and fiber.

[@davegoodridge8352]

“Non digestive air” lol. My mother called it ‘ having the windys ‘

[@gretchenbrister8620]

So did mine!

[@whitewolf7812]

Hawks are very territorial, and they do not share space with other hawks/families. They are not social either, like chickadees are for example. Your black birds must have a nearby nest, and are alerting the hawk to get lost. Nice catch!

[@elzekloen]

It's called mobbing, and a lot of animals will do that when they spot a predator. The most common example I know of is birds of pray and crows, but it's not exclusive to birds. Fun fact number 1: mobbing often occurs when the predator is not hunting, like you see here. It really is a 'get lost' message, instead of the animal fighting back and defending itself. Fun fact number 2: males will often use mobbing to show off, so when there are females watching a larger amount of males partakes in the mobbing then when there are no females around.

[@kimbaker2874]

Mary, it would be hilarious to play Pictionary with you! You come up with great ways of describing things you don’t want to say!!!!!

[@amandagross4630]

Just in case you ever have medical supplies like port flush from Ivs, I know they give me way more than I use, and bring me out piles of it all the time, donate to medical missions. They really need it and can use it. I was even able to send old wound vac supplies but flush and dressing change kits, 4x4s, 2x2s, all can find a good home that way.....FYI for anyone that has that stuff at home.

[@ecologist_to_be]

Yes i was wondering what happened to still sealed in date supplies as seems a waste to throw

[@kecrn4132]

Sarah - some medical missions will take stuff that has expired too (I’m not sure about medication )...

[@amandagross4630]

Sarah yes, they will take expired Flush and heparin for sure. Haven’t tried to give them more than that but they are not governed by fda rules and will take more than you would think.

[@curlybibliophagist2]

Even though it is considered rx? I help a friend take care of her adult son, who suffered a TBI and is total care. He has so many extra Kangaroo bags, 60 cc syringes, etc. We'd love to be able to get them to someone who could use them.

[@amandagross4630]

Even if it was rx in this country, they can use it in countries where the medical standards are petty low and you buy meds from some lady under a tent at a market and you don’t even know if it’s counterfeit.

[@alicechatty9807]

Yes! Definitely do indoor skydiving, I have done it many times and it’s great fun!

[@coalcampcrafter8348]

I just want to say I admire both of you! I just found your channel a few days ago. I'm catching up on older videos and watching newer ones also. I just want you to know there is nothing God can't do, you're in my prayers and I truly admire you both for being open and honest and so real!

[@thefreylife]

Coal Camp Crafter we're so happy to have you joining us on our Frey Life journey! Welcome! And thank you for the encouragement! :)

[@melissacaudell1622]

I am glad you are feeling better Mary. Still praying for you guys . You guys are so cute together

[@_Summer.]

4:13 - 4:28 that’s the longest it’s ever taken someone to say “I was farting and had diarrhea” 😂

[@eej1983able]

I almost choked on my calzone when I started laughing 😂

[@NorseButterfly]

Omg! That young man on AGT was amazing!!! Simon was looking at him like "ummm...", you know how he does, and then he started playing that piano and the song that came out of his mouth!! I had chills! He earned that golden buzzer!!

[@natashak3387]

You guys are amazing people that I enjoy watching no matter what is going on. I really wish that I could send you guys a video I took a few days ago of multiple crows diving down at an owl in one of my trees. It was an amazing experience to watch and the owl was gorgeous. Take care!

[@thefreylife]

Natasha K, That's so cool you got to see that! What an experience!

[@trulygodsgrace]

I'm on a blended tube feeding diet and I totally understand that it doesn't work for everyone. Glad you are doing what you need to do for you.

[@thefreylife]

allgrace I'm so glad to hear you've found what works for you! :)

[@tiffanycothren6994]

Kodi Lee has my forever vote!!! Love AGT

[@HiKatieB]

Thanks for sharing all your feeding tube knowledge with the Internet, Mary! In the summer, I work at an extended school year program for kids with IEP's who need it. This year I was placed with a student who recently got a g-tube. I am not responsible for anything to do with it (best nurse ever), but I was able to have an educated conversation with the nurse describing the equipment that was sent in. I also wasn't weirded out by it at all because I knew lots and I knew enough to ask where it was so that I didn't pull at it when using other equipment. Fortunately, she did a great job eating today and didn't need any feeds at school! You never know when this kind of knowledge comes in handy! I don't usually work with kids with big health stuff.

[@thefreylife]

HiKatieB that's so great that you got to work with that little boy this year and learn more about his feeding tube - sounds like he had a great nurse and lucky to have you working with him! :)

[@chende62]

You can say fart. We will still love you, Mary!😊💕

[@kimpossible7505]

chende62 😂😂😂

[@Justaroundtheriverbend]

Mary and Peter always make me smile in the intro! 😁

[@liesbeth9810]

They have always told me (many different gi an dieticians) that blended diet isn’t compatible with j tubes for different reasons. Mostly because you need the stomach juices and acid to digest the food and make it possible for your body to actually get the nutrients out of the food that you need, but also because blended diet mostly can’t be given by pump (as it is to thick, or you need to make the volume to big to make it thin enough to give by pump) but is given by bolus, and j tubes normally don’t have the reservoir function the stomach has, so you can’t/ aren’t allowed to bolus the( blended) food with an syringe (as you can get something called dumping syndrome that can cause you to sweat heavily, drop your blood sugar dangerously low, discomfort and more).

[@thefreylife]

Liesbeth Bruinekool thanks for sharing!

[@liesbeth9810]

The Frey Life no problem, hope it answered your question 💚 some people might tolerate it, but it isn’t recommended.

[@wolfsrule100]

Whoa! Those birds were so cool!

[@rollingonwards6472]

My grandpa who loved nature said that one should always have binoculars in the car! I recently found out that I no longer can tolerate Kate's farm. Unfortunately I would ideally have a jtube but there is no place in my body to hold it. I have life threatening allergies that left me with one formula choice but it's a powder and it just won't go down the pump...you mix it but not everything dissolves. I don't have a fully functional stomach and blended foods would not go through the tube...I have a degenerative disease and cannot swallow well so I do my best but I am 46 pounds. I had heart surgery the day before yesterday and one nurse commented that she wished her body was like mine...I can't even walk! I guess she was trying to be nice? Anyway Mary, I used to have IVIG the same day your video came up so I felt like I was going through it with a friend♥God bless you guys! Sincerely, Jessica

[@morgan_williams]

Mary is right! Those birds are protecting their nest :)

[@thinkpawsitive2977]

I just turned 40 May 30th. For my birthday I wanted to skydive. My doctors told me NO for real skydiving so a YES for indoor skydiving. So, I'm currently looking for an indoor skydiving place🤗 I find it hilarious you have binoculars in your car🤣 Definitely post a video if you guys go. Falkor🐶&Tracee🤗

[@zootmade]

Think Pawsitive If you haven’t yet, my favorite is iFly!

[@2listening1]

0:35 Dr. Aaron Boster, the MS doc on KZbin, always says "Howdy" Mary, and I found him because of MS walk ads on your channel. They're usually in May like the CF Great Strides walks are. :)

[@suehamilton8531]

aww the song from Rudolph "there's always tomorrow" love it!!!

[@lorrisalerno563]

You would make a great nurse you’re quite knowledgeable about your health care and compassionate, have you ever thought about going into nursing?

[@TechGirl84]

I want to try the indoor skydiving. I’m in a wheelchair, but there is a place near me that says they can accommodate those with disabilities. So I’m down with trying that for sure!

[@sandielee6278]

I think the black birds were protecting eggs or babies

[@hippiebabe4289]

Yes that's what they do when something is close to their nest

[@rmjames83]

The hawk doesn’t seem bothered! Wow!! The hawk probably thinks “oh no biggie, it happens on the daily!” Certainly looked like that!! INCREDIBLE!!!

[@emilyneal92]

Indoor skydiving is THE BEST

[@nicholeanderson426]

My 4 year old autistic daughter has a gtube and is on peptamen jr 1.0 and 1.5! She can’t tolerate much of the 1.5 or she gets super gassy too 😆! Thanks for sharing- glad you found something you tolerate! ❤️

[@bostonsbabies801]

My son has a GJ tube and he uses the complete blended diet tube feed thru his j. I know that it won't work with your cartridge but his gi is 100% ok with blended diet thru the j as long as it's very smooth because he has a GJ instead of just a straight j.

[@thefreylife]

Bostons & Babies thanks for sharing! That's so interesting!

[@savannahmarcello6690]

I just found out a girl I graduated with just passed away from cf and it’s really sad she was only 20 and was the most kindest person you would have ever met and I feel so sad cuz she didn’t deserve that and I hope her friends and family will be okay

[@bostonsbabies801]

Also for the unused formula I would contact the Parker Lee project. They are amazing. We've used them before when we couldn't get some supplies covered and they really do a lot to help people out. I also donate things when we have to much because insurance supplies too much of certain things and they build up and become a nuisance to store.

[@Aintnohollabackgirl]

They're totally protecting the nest. Amazing footage!

[@sassydietitian4920]

This was super interesting! I'm a dietitian that works with CF kids and we usually use Nutren 2.0 just because its so calorie dense that they only have to be on it a few hours at night to meet their needs. I'm glad you found something that works for you! I've never heard of using a blended diet in the j-tube but I know you technically cant bolus into the j-tube so maybe thats also one issues. Running real food blends or blended food formulas voids your pump warrantee too!

[@haileybradley6416]

My 12-month-old, Caroline, currently has an ng tube. She hates when I have to replace it or the tape, but it's saving her life. She's such a good sport.

[@thefreylife]

Hailey Bradley, your daughter is such a trooper (and you!)!

[@penelopepolinsneemeyer4757]

Little songbirds will often mob a bird of prey to protect their mates or their nests xxxxx

[@lv4153]

I use Compleat Organic Blends Plant Based through my straight J tube and it works fine even at a higher rate of 90ml/hr. I wouldn't use a homemade blend but my body absorbs it just fine.

[@lindapagel2274]

We have to mix granddaughter's formula (Suplena) with Pedialyte and water. It was a process discovering what she could tolerate. It is amazing how different everyone's bodies are.

[@thefreylife]

Linda Pagel, I'm so glad you were able to figure out what combination of formula/fluids your granddaughter needed! :)

[@kerryboschetto2181]

I was always told never put off till tomorrow what you can do today, I think my parents ment homework and cleaning my room growing up, but I think it's a great life lesson x

[@ecologist_to_be]

Crows are brave I know as one chased my cat lol

[@thefreylife]

Sarah oh my goodness - glad your cat is okay!

[@hemalatharamasamy7760]

The way Peter says "good morning"is very funny!

[@annalenalorenz4024]

Sorry that I have to write it in German. I'm originally from Germany, so my English isn't perfect and I don't know some words. Der Magen kann ganz normal Nahrung, die man auch oral verabreichen könnte, verdauen, den im Magen beginnt die erste enzymatische Verdaung durch den in Magensaft beinhalteten Enzymen und Säure. Hauptsächlich wird Eiweiß verdaut. Im Jejunum (Zwölffingerdarm) wird zu den anverdauten Nahrungsbrei, welcher mit Magensaft vermischt wurde, Verdauungssaft von der Bauchspeicheldrüsse, welcher Enzyme beinhaltet, und Gallensaft hinzugmischt. Das heißt das Jejunum kommt am besten mit anverdauter Nahrung zurecht, da das die physiologische Form des zu Verdauenden Nahrungsbrei ist. Im Magen ist es egal ob die Nahrung anverdaut ist oder nicht, da die Nahrung sowieso mit Magensäure und Enzymen zersetzte werden würde.

[@too_tired_for_this]

I wish I had people in my life like you guys. ❤️

[@thefreylife]

Rebecca Brazil we're so happy to have you on our Frey Life journey with us! Have a wonderful weekend!

[@StefanieRoyMusic]

I remember the feeding tube journey like it was yesterday! Time flies.

[@janineschindler2966]

So bird taunting is a thing I didn't know that. That was so funny I thought it was going to attack!!! LOL Looked like it was getting so close. Haha

[@rebeccaaaaaaaac]

Most digestion occurs in the small intestine but most of this happens in the first part of the small intestine (the duodenum which is the part before the jejunum) but the small intestine typically has a higher pH than the stomach and the low pH of the stomach is needed to kill bacteria in the food you consume and the pH also aids in chemical digestion. The stomach also releases certain enzymes for the digestion of proteins and fats. So most likely if you were to blend up normal food and insert it directly into your jejunum you would not digest or absorb the nutrients from it as well as you would if you were to put it directly into your stomach.

[@ericarolli]

I’ve blended just about everything and fed via j for my daughter. Fats don’t seem to digest as well for her so we do a higher carb formula or we use liquid hope. It’s been 5 years now.

[@Flo-cy4xc]

Liquid hope? Like, Felix Felicis? Sorry I've watched too much Harry potter :p

[@catty127]

@@Flo-cy4xc girl after my own heart lol

[@Livingtheinvisiblelife]

I use liquid hope through my j tube. It is a pre made blended diet and it works much better than any other formula I’ve tried.

[@Livingtheinvisiblelife]

I also know someone who uses relizorb with Kate Farms.

[@ericarolli]

My 10 year old uses liquid hope via her j too! It’s so good for her. We just have to add a bit of water because she needs more fluids.

[@hannabfree]

I drink the Kate Farms Komplete shakes and they’re sooo good!! But that sucks they didn’t work for you cause I feel the same way about the ingredients! It’s tough when we have try something that we don’t necessarily want to try.

[@greenpeacesign420]

I had a preemie baby a few years ago, he had an NG tube through his whole 12 week NICU stay, we *thought* we were going home with his NG, so I was trained to change it. It was very scary, but I learned how. The next day God worked miracles and he came off his NG and his 02 and came home!!!!

[@rmjames83]

Did u put the newer packs of formula at the back/older ones at the front? Just a suggestion 2 “rotate” ur formula 😉 It’s INCREDIBLE that 1/2 calorie-0.5 made a massive difference 2 you!!! Our bodies r amazing things!! David Attenborough is my HERO-along with u too Mary & Peter!!

[@mymax43]

I can relate to this video. I tried Kate Farms for the same reason and had a similar result.

[@ksmegn]

"What in tarnation?!" 😂😂 I love watching you guys!!❤️

[@sylviahaley9564]

I don't know about most infants, but this mother sure makes it look pretty easy. Look up: ~ How to place an NG tube in a baby, plus some helpful tips! ~ on youtube.

[@schatzfarms4471]

Hopefully you can donate them instead of throwing them away. Also could you just use 1/3 less and dilute with water?

[@axbt014]

Me too. There are charities that take unused medical stuff and will redistribute it to people who need it.

[@sandrabentley1420]

@@axbt014 Medical Missionaries

[@arasor5570]

She didn’t say she was throwing it away, just that she was removing it from the readily accessible shelf.

[@imcnagpc2]

I had to google it too. It's called "hawk mobbing", usually done to protect offspring. The hawk doesn't leave because it will just happen at the next place it perches, so it just puts up with it.

[@megganmcclincey1971]

I really enjoyed this vlog. Very funny and who knew birds do that?? 🤣🤣. Thanks so much! Love you all! 😘

[@eduardopadilla5505]

Birds flirting, beautiful!

[@mommy2kdk]

Not sure if you will read this. My husband and I are curious to what denomination Peter preaches for? We are currently unable to attend church due to my husband's job. He would like to stay with the denomination he was raised if possible with online sermons. Thank you so much!

[@heathermcdonald460]

What denomination are you? I'm Baptist and there are 2 churches you can follow on FB that post video sermons each week.

[@thefreylife]

mommy2kdk, great question! Our church is an evangelical church, affiliated with the CCCC (Conservative Congregational Christian Conference). Here's the link to our church website and Peter's sermons, feel free to check them out! www.uniongrafton.org/sermons.html

[@sandrabentley1420]

I think he did training at Moody Theological college in Chicago. He is evangelical I believe.

[@Disapointedmellencol]

There's a book I ran across today call five feet apart about two young CF patients that meet during a hospital thing and we'll the book seems to be how to have a relationship when you can be closer then five feet! But I saw that and thought of you marry,it looks like a neat book and neither of the main chars seems nippy about their disability w itch is also a nice change,if you go the library maybe check it out? Possibly book review from someone living life with CF?I think that's be neat

[@marieked]

I’m on the 1.5 peptamen, I did the 1cal one too, but they were both the same in a way I digested it. Though (TMI) when I’m only on feeds I get diarrhea, if I eat a bit I’m fine. Go figure!

[@Dreamer5211]

Hi Guys , Mary I had no idea there were all those different kinds of feeding formulas , I thought it would just be like on kind that had the basic nutrients one would need , who knew !! I must admit I was totally perplexed when you started speaking about your smell , I never considered the outcome of need to receive nutrients in that way. Peter , Mary has you on KP duty !! , good man :) What was with those birds !! That one bird sitting on a light pole , just chill`n enjoying the view and these other birds were literally picking on the poor guy , geez. Anyway , thanks for the video , take care , Gary 

[@minechick65]

11:00 my bird just started watching like “what the heck is that 😳😳😳” lol

[@darlenehaley6781]

Howdy ya'll from Oklahoma!

[@Bloodhoundfostermom]

If you have any formula you are not using ...I'd be willing to take some if you're just going to throw it away....I'd be willing to pay a small amount for the formula and pay shipping ....I have no insurance....I have gastroparesis with intestinal obstruction,no stomach ,j tube ....I'm feeding tube dependant...if it's already spoken for I completely understand ...when I'm feeling weak and exhausted .... you give me hope 💗💗💗

[@sonyathompson1989]

My 19 month old has a gtube, balloonless one. Shes on peptamin jr. Its fascinating to me to see the kinds of formula other tubies are on

[@hemalatharamasamy7760]

Please upload some of your fun videos. I love you ,Mary!

[@gthornton3]

Wow amazing video of the birds

[@thaliaoneal3847]

I have a feedingtube too since I was a baby I been using peptamen jr 1 I was using 1.5 but the dr had to change it beacaues my stomach was hurting and so much gas I normal talk about my feedingtube and stomach and lung on my channel too

[@decadentnight]

We have a family of several hawk residents in our oak trees on our property. They sqawk, hunt and are chased all day everyday by many different birds mainly blue jays its intense!

[@darkbluematter1753]

I tried a whole food formula with chicken, veggies, and fruit. Sounded so awesome, but it made me feel like I had food poisoning as well. And I don't have enzyme issues. I don't know how it made me so sick. Back to my Osmolite I went.

[@meganyounger4842]

Skyzone is what it is called in the Midwest. I went in Denver. You have to put on a tight flight suit and helmet. Mary you can always just watch Peter if you don't want to do it. It's loads of fun!!!

[@thefreylife]

Megan I'm so glad you go to go and enjoyed it!

[@meganyounger4842]

@@thefreylife the one in Kansas where I live is called iFly, so they must be different chains all over the US. Regardless, enjoy if you go!

[@franlats0705]

As the mum of a preemie I cant tell you its horrid to see your child go thru it, my eldest needed one and the tape took his delicate skin off. You hate to see it but know it's what is the best course of action. Xx

[@monicalauber2934]

Since you are not having that formula (red), what did you do with it?

[@spoog314]

Mônica Lauber I wonder if one could donate or resell it instead of just throwing it out :/

[@missluciddreams3472]

I can't imagine wat it is like being on a feeding tube but u make it look so easy 😁

[@donnamack5821]

Hi Mary and Peter: Your bird activity is actually pretty common. It's called mobbing. Hawks will sometimes prey on other birds (some more than others) so some brave birds will mob perched hawks. Especially crows, which is probably what those black birds were. But the crows will get their due. Mockingbirds will mob crows. ALWAYS, keep those binoculars in the car!

[@Crystalthewolf1000]

Mary’s binocular face was amazing

[@kareng6998]

I think the birds have babies near by. They won't let that hawk at 'em. That is my guess.

[@TianaMarie9184]

Omg they have indoor skydiving in Mass!?!?! I wanna try so bad!! I'm gonna wait and see how you guys do, then maybe I'll try 🤣🤣 I dont want to have it affect my fibro and my spine, but it sounds soooooo fun!!!

[@kimpossible7505]

11:48 - I may or may not have said, “crikey mate!” 😎😂

[@jillybean6]

I had to have a temp ng til I could get my actual g-tube. I was over 30. It did suck

[@kokopuppy57342]

I wonder if you could mix the formulas so you get some calorie benefit and use up some of that red formula? Maybe like ¼ red ¾ blue?

[@liwmld]

i am pretty sure those blackbirds were warning the hawk to stay away from their nest. i recently read an article that said once an owl moves into a new neighborhood, all the birds of the neighborhood band together to try to shoo the owl off, as owls are predators and a big threat to their eggs/babies.

[@Jane_Snow_]

Ravens are very territorial and protective about their young. The hawk knew there were babies in the nest and had his eye on his lunch. I got dive bombed by a raven protecting her nest on Pisgah Trail in the Blue Ridge Mountains.😮

[@mikaylat9921]

I’m a nurse on a GI floor, and we aren’t allowed to put anything except pure liquids down a Jtube. Our doctors feel they lead to fecal impactions; but some of my patients have told me they’ve tried it 🤷🏼‍♀️

[@thefreylife]

Mikayla T, thanks for sharing your insight! :)

[@jaceyxo]

The bird thing happened to us as well. My husband was outside and called me out to watch. They did they same thing but our hawk had another bird in its claws. It must be some sort of protection for their own. Seeing as our hawk had a other black bird in its claws.

[@cp1487]

How do you get your insurance company to give you all of your extra supplies? My insurance will only allow me to get my supplies a month at a time. I have no extras of anything. Help! Please do a video about your insurance and how you get your supplies.

[@alanahill13]

I know this was a year ago, but the second you said America’s Got Talent, I got a yt notification from them😂

[@lynnrose7562]

That one hawk was on a mission. Wow! I never knew hawks did that.

[@Abbylorenaa]

I had anxiety watching those birds 😂😂😂

[@notshaken62]

I was out on a lake kayaking last week and I got a very similar show. I wondered if the hawk was too close to the babies or eggs in the nest. It was very entertaining

[@axbt014]

My baby had an NG tube until February. It was horrible inserting it. I felt like a g tube was giving up on her eating orally. Now she has the g tube and I don't miss the ng tube.

[@sunnya8]

When you snuck up on Peter singing in the kitchen it made me giggle

[@starlamiller7703]

Do you have to take more of the one calorie formula than you would of the 1.5?

[@eej1983able]

Perfect timing to click on this video as I'm eating dinner 🤣

[@suehamilton8531]

Lol Erin!!

[@jaytee2642]

Yep, I've made the all-too-frequent mistake of watching while I'm eating. It's my own fault...I KNOW better!! LOL

[@anniem4305]

Howdy right back to you!

[@MelodySharp.]

Oooh man the red boxes didn’t work for me too, it was too rich and thick my stomach hated it, made me feel too full at all times

[@christienbbrooks7334]

I’m always looking for info on other people that use formal and there experience and what others use.

[@christienbbrooks7334]

I’m really looking for something that might work better than the one that I’m on now.

[@catloverKD]

Apparently they'll do it to owls too. I was in the driveway one night and there was an owl in the tree (sitting there completely frozen) being dive bombed by birds.